Husband had Whipple surgery and chemo: He's uncomfortable

@joanalc, how are you and your husband doing?

I was stage 1 but went through 12 rounds of folfirinox, then 15 rounds of radiation with oral chemo, then my Whipple just last December. Obviously everyone is different, but it does not sound excessive to me. I would do anything not to have a reoccurrence.

Thank you for sharing your story

@joanalc , I'm not a doctor, so I couldn't tell you if that's appropriate or excessive, but it does sound aggressive, which might be good, as long as he's in good enough shape to tolerate it.

How long has it been since your husband's Whipple and last CT scan? Are you also testing CA19-9 and ctDNA (Signatera or similar) regularly?

What chemo meds was he on for 6 months after Whipple? What pills are they putting him on now, and why? Did he have any genetic mutations (KRAS, BRCA, ATM, etc) they're trying to target with the new pills?

What are they targeting with the radiation, and why?

The radiation is something I would definitely question, because they have to have something to aim it at. It sounds to me like the oncologist saw something on the CT scan that was concerning but not yet definitive, and wants to exercise every precaution possible.

FWIW, I also had a successful Whipple at Stage-2 after 6 months of Folfirinox, with clean scans, ctDNA tests, and good CA19-9 for 3 months afterward. (No adjuvant chemo or radiation after the Whipple)

But at the 4th month, MRI spotted a new 2 cm tumor where my Whipple was done, even though the other tests and another biopsy were still all normal. PC is a sneaky bastard, to say the least. By the time we did another MRI 6 weeks later, all the blood tests and MRI said the cancer was definitely back, and had spread as well. Stage-4 for me now. 🙁

Based on that experience, I wish I had done some kind of treatment after the Whipple, despite being NED. There's a term "MRD" (Minimal Residual Disease or Microscopic Residual Disease, depending on which papers and websites you read) that describes remaining cancer that is undetectable but can definitely come back and multiply. As @stageivsurvivor will attest, sometimes you have to beat the disease into submission and beyond.

I wish you and your husband well with the treatment, but it sounds like your oncologist could do a little better with the communication. Answers to the questions above would help shed some light.

My husband underwent Whipple surgery(stage 2b) successfully. He is now completing 6 months of chemo. His last cat scan was fine. His oncologist is now recommending 6 more weeks of radiation (5 days per week) combined with chemo pills. Does this sound appropriate or excessive?

Hi Rod54. We may bump into one another here at Mayo - Rochester. I'm likely Stage Ia as well given the relatively small size of my single tumor, though I'm awaiting EUS biopsy to confirm the almost certain diagnosis. Pancreatic C-T Angiogram results tomorrow will determine extent of venous and arterial entanglement with the tumor and whether or not the tumor is resectable/operable. According to the two gastroenterologists who evaluated me earlier today it is probable I will have 3 months of chemotherapy, followed by surgery, followed by additional chemotherapy. Questions for you... Over how long a period of time will your 8 chemotherapy treatments last? Have you had your first chemo treatment yet? How soon after your final consult does/did your initial chemo treatment begin? Thanks in advance. - wjk

They are accessing my overall wellbeing with one of my oncologist every other week with blood work.

Hi
I am being treated at Mayo with stage 1a Pancreatic Cancer. The plan my Doctors have in place is 8 sessions of chemotherapy and have a CT scan and PET MR scan every 2 months.

I am on CHEMO. Lost almost 20 pounds but now back up to 123 from a low of 115.
Boost "very high calorie" from Nestle has helped a lot It has 530 calories in a 8 oz package.

For what it's worth, over the past couple of weeks I've read and compiled numerous online resources as my wife and I attempt to get a firm handle on the pancreas and pancreatic cancer. These listed resources, arranged by topic, vary in depth and quality, but all have been helpful to us to some degree. I continue to edit the contents every few days as we learn more. I hope people find something in this this list helps someone along their way.

Pancreas Anatomy/Physiology
Basic https://open.oregonstate.education/aandp/chapter/17-9-the-pancreas/
Advanced https://www.kenhub.com/en/library/anatomy/the-pancreas
Physiology https://www.ncbi.nlm.nih.gov/books/NBK459261/

Pancreatic Cancer
Basic https://en.wikipedia.org/wiki/Pancreatic_cancer
Signs/Symptoms https://betahealthy.com/20-pancreatic-cancer-symptoms-you-should-never-ignore
Dx and Rx of Pancreatic Cancer https://youtu.be/Zd4rZjlu6H8
Pancreatic cancer explained (CNN) https://edition.cnn.com/2020/11/08/health/pancreatic-cancer-explainer-trebek-trnd/index.html
Pancreatic Cancer types https://www.hopkinsmedicine.org/health/conditions-and-diseases/pancreatic-cancer/pancreatic-cancer-types
Pancreatic cyst types https://seenamagowitzfoundation.org/pancreatic-cysts/
Types of Pancreatic cancer https://pathology.jhu.edu/pancreas/types-of-tumors
Cancer stages https://www.hopkinsmedicine.org/health/conditions-and-diseases/pancreatic-cancer/pancreatic-cancer-types
John Hopkins https://www.hopkinsmedicine.org/health/conditions-and-diseases/pancreatic-cancer
Mayo Clinic https://www.mayoclinic.org/diseases-conditions/pancreatic-cancer/multimedia/vid-20537986
City of Hope https://www.cancercenter.com/cancer-types/pancreatic-cancer

Support Networks and Foundations
Pancreatic Cancer Action Network https://pancan.org/
National Pancreatic Cancer Foundation https://www.npcf.us/
National Pancreas Foundation https://pancreasfoundation.org/
Hirshberg Foundation - UCLA https://pancreatic.org/
Seena Megawitz Foundation https://seenamagowitzfoundation.org/
NIH NCI Pancreatic Cancer https://www.cancer.gov/types/pancreatic

Top rated hospitals for gastroenterology
Mayo Clinic top rated: https://health.usnews.com/best-hospitals/area/mn/mayo-clinic-6610451/gastroenterology-and-gi-surgery
All rated hospitals https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery
Choosing Pancreatic Cancer hospital & doctors
https://pancan.org/news/choosing-the-best-pancreatic-cancer-doctor-and-hospital-for-you/
Pancreatic Cancer Treatments
Roadmap for treatment https://pancan.org/news/pancan-publishes-roadmap-for-treating-patients-with-pancreatic-cancer/
"Right Track" model https://academic.oup.com/oncolo/advance-article/doi/10.1093/oncolo/oyad080/7116284
Treatment advances https://www.comhs.org/about-us/newsroom/health-library/2019/04/02/treatment-advances-making-pancreatic-cancer-a-less-deadly-disease
Immunologic implants https://www.houstonmethodist.org/newsroom/implantable-device-shrinks-pancreatic-tumors/
Promising Pan Can Vaccine https://www.nytimes.com/2023/05/10/health/pancreatic-cancer-vaccine-mrna.html

Whipple Procedure
Mayo Clinic https://www.mayoclinic.org/diseases-conditions/pancreatic-cancer/multimedia/whipple-procedure/img-20008531
Drs.at Mayo - Rochester who perform Whipple: https://www.mayoclinic.org/tests-procedures/whipple-procedure/doctors-departments/pdc-20385055
MDAnderson (Texas) https://www.mdanderson.org/cancerwise/whipple-procedure-and-pancreatic-cancer-treatment-9-things-to-know.h00-159459267.html
UCHealth - Cincinnati https://www.uchealth.com/en/treatments/whipple

(ERCP) Endoscopic Retrograde Cholangiopancreatography
https://www.niddk.nih.gov/health-information/diagnostic-tests/endoscopic-retrograde-cholangiopancreatography
(EUS) Endoscopic UltraSound
https://www.mayoclinic.org/tests-procedures/endoscopic-ultrasound/about/pac-20385171
CA 19-9
https://pancan.org/facing-pancreatic-cancer/diagnosis/ca19-9/
https://medlineplus.gov/lab-tests/ca-19-9-blood-test-pancreatic-cancer/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6280291/
Diet and Nutrition Pancreatic Cancer
Nutrition and pancreatic cancer https://www.hopkinsmedicine.org/health/conditions-and-diseases/pancreatic-cancer/pancreatic-cancer-nutrition
Importance of diet https://cancercommons.org/latest-insights/pancreatic-cancer-why-diet-is-important/
Starving cancer https://elissagoodman.com/health/cancer-fighting-gut-cells/
Post Whipple diet https://www.nyp.org/documents/nutrition/resources/Client-Ed-Whipple-Surgery-Nutrition-Therapy.pdf
Best vegetables https://pancan.org/news/friday-fix-best-veggies-pancreatic-cancer-patients/
NPF's Recipes for Pancreas Disease https://lsc-pagepro.mydigitalpublication.com/publication/
Juicing recipes (Stanford) https://stanfordhealthcare.org/medical-clinics/cancer-nutrition-services/recipes/juicing-recipes.html

Alternative Meds and Treatments
PSK (Krestin) https://www.researchgate.net/publication/233875400_Polysaccharide-K_PSK_increases_p21WAFCip1_and_promotes_apoptosis_in_pancreatic_cancer_cells
PSK (Krestin) https://pubmed.ncbi.nlm.nih.gov/23217280/
Krestin https://www.sciencedirect.com/topics/medicine-and-dentistry/krestin
Turkey tail mushrooms https://www.verywellhealth.com/turkey-tail-mushroom-6890534